Living With Cystic Fibrosis podcast | Listen online for free

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70 years strong: The Luanne McKinnon story.
A 70-year-old person with cystic fibrosis. It’s a phrase that wasn’t just uncommon a few decades ago—it was virtually unheard of.When Luanne McKinnon was diagnosed in 1969 at just 13 years old, doctors told her parents she might live to be 19 years old. Today, Luanne stands on the edge of her 70th birthday—a milestone that not only redefines possibility but embodies resilience, creativity, and purpose.Born in Dallas, Texas in 1955, Luanne was diagnosed at a time when cystic fibrosis was still barely understood. No vests. No targeted medications. No community. And yet, she carved out a life of profound impact. “I stand as a witness to the possible.” says Luanne McKinnonAfter earning a Master of Fine Art in Painting and a PhD in Art History, she launched a celebrated career in the visual arts—owning an art dealership in New York City, directing major university museums, publishing works, and curating over 35 exhibitions. She even became a Fellow at the prestigious Getty Research Institute.And while that would be more than enough for most of us, Luanne continued to pour herself into advocacy—serving as Co-chair for Stanford’s Patient and Family Advisory Committee, raising awareness for CF patients before and after transplant. In 2011, she underwent a successful double-lung transplant at Stanford, and fourteen years later, she is still very much living proof.This episode is not about her equally remarkable husband—EMMY award-winning filmmaker Daniel Reeve—though we’ll mention him later. This is about Luanne—her life, her art, her truth, and her refusal to let a diagnosis define the limits of her possibility. She says, “I stand as a witness to the possible.”And after listening to this conversation, I think you’ll believe in the possible, too.Welcome, to a very special episode of the Living with cystic fibrosis podcast and our incredible guest, Luanne McKinnon. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en
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Live Fearlessly: Jacob Venditti
Eight miles. Two friends. One cause.In this inspiring episode, Jacob Venditti opens up about his life with cystic fibrosis, offering candid updates on his health and the challenges he faces as he prepares for a lung transplant. He emphasizes the vital role of community support and shares how his work with the Live Fearlessly Foundation fuels his mission to empower others. Jacob also sheds light on the rare disease income threshold amendment he's championing, which aims to create more equitable opportunities for patients. The conversation builds toward his upcoming Crossing 4 CF event, showcasing his unwavering resilience and commitment to living fearlessly.The heartfelt conversation continues with Rob Brown. Rob talks about their upcoming 80-mile paddle race aimed at raising awareness for cystic fibrosis (CF). Jacob shares how open ocean paddling has become both a personal passion and a powerful way to connect with the CF community. Rob reflects on his enduring friendship with Jacob and their mutual love for surfing. Together, they highlight the healing power of the ocean—physically, mentally, and emotionally—especially for those living with CF. To connect with Jacob and his team: https://livefearlesslyfoundation.com Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en
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From Bulky to Breakthrough: The Future of Airway Clearance
From Clunky to Cutting-Edge: The Evolution of Airway Clearance with Nicole DunnWhen our daughters first received their vest machines, they felt like they weighed a hundred pounds and had to be plugged into the wall. The vests didn’t fit well—riding high in the armpits and leaving much to be desired in comfort and function. Fast forward 25 years, and everything has changed.In this episode, Laura talks with Nicole Dunn, Senior Market Development and Education Manager at Tactile Medicaland an expert on the AffloVest. With a strong background as a registered respiratory therapist and a deep passion for respiratory education, Nicole is at the forefront of innovation in airway clearance therapy.Together, they dive into the evolution of the AffloVest—from its design improvements to the company's mission to provide accessible, life-changing therapy for people with chronic respiratory diseases like cystic fibrosis. Nicole shares how patient feedback has shaped product development, the impact of CF modulators on airway clearance, and how community engagement plays a vital role in Tactile Medical’s approach.This episode is full of inspiration, real-life success stories, and a look at how far we’ve come in improving comfort, mobility, and quality of life for people with CF.To learn more about Tactile Medical please visit: https://tactilemedical.comTo learn more about AffloVest: https://affloVest.comFor questions: [email protected] Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en
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Milestones, Medicine, and the CF Community with Siri Vaeth
CFRI’s Executive Director, Siri Vaeth is sunshine to me. She’s a dear friend.We met after Siri took on her role with the Cystic Fibrosis Research Institute. I consider Siri a dear friend, and a mentor. Siri is truly among the smartest people I know. She is an advocate for her daughter Tess, who has CF, and is an incredible advocate for the CF community. If you need legislation explained to you, Siri can help you. She can put it in a way you'd understand.In this insightful conversation, we explore the evolving landscape of the Cystic Fibrosis (CF) community. We share personal updates and discuss key advancements in treatment, while also addressing ongoing challenges faced by patients and families. Topics include the emotional weight of age milestones for those with CF, collaborative organizational support, and critical legislative issues impacting the rare disease community. The episode also delves into the growing cancer risks in CF, the importance of regular screenings, and the difficulties patients face with insurance coverage. Emphasizing the vital role of the Cystic Fibrosis Research Institute (CFRI), they highlight its efforts in advocacy, education, and psychosocial care. The discussion calls for increased participation in clinical trials, better funding for rare disease research, and greater awareness of diversity and the implications of late CF diagnoses."The CF fight is far from over. From cancer risks to access to care, this conversation is everything." Siri Vaeth.To learn more about CFRI: https://www.cfri.org Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en
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Aaron Trumm: living his best life!
I love that I was able to bump into Aaron Trumm via an email. He reached out to check in about our scholarship program for college. We only award grants to undergrad students, but I was intrigued by all I learned about him.Aaron has CF, he is post-transplant, he started a recording label, he plays the piano and wraps, And he worked with the man known as the Lion of Zimbabwe. And he’s going to law school in the Fall.We have a lot to talk about! To get in touch with Aaron:https://aarontrumm.comA music production education brand:https://recordinglikemacgyver.com This site Aaron says is disappearing soon! https://nquit.com Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en
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